LisaM

Hi bmom, I too am trying to figure this PANDAS thing out. I feel like there are 3 groups of people on this forum: those who know for sure their kids have TS (genetic most likely), those who had sudden onset of symptoms after strep or illness (PANDAS) and are clearly helped by antibiotics, and a group who is just not sure. I do wonder if the whole spectrum of tic disorders, whether genetic or not, can be triggered by illness, detected or not. I have come to learn that my daughter is pretty much asymptomatic for strep which leads me to believe we missed it in the past. I am trying to figure out the whole antibiotic connection... does it work for those whose titers are normal and test negative for strep but have a flare up of symptoms- does it only work in those who have that definite strep connection from the first onset? bmom, did you have your son tested for strep in Feb. when it started? How about in the last 3 weeks? Since your husband tics I would say there is that definite probability of genetic influence. But again, you mentioned that your son has had strep alot in the past. Is there a connection to strep? PANDAS criteria states sudden onset after proven strep, but I'm not sure that it can't be a bit more subtle than that. Sudden and severe or other definite symptoms that don't get linked to strep- not so severe perhaps that they may not be attributed to strep etc. esp. if a child doesn't have classic symptoms of strep. ???? I know I haven't helped you any... but I think many of the parents here are on the look out for the strep connection... I would definitely recommend having your son tested for strep whenever you may suspect it - sore throat, symptom flare, behavioral changes etc. Lisa Lisa

We use the Bontech TS control Plus and just started a new container and the pills are much less yellow than all the other batches. Have any of you noticed this? Is it normal? I called Cas this morning but she wasn't in yet. Thanks Lisa

I am curious about the treatments for PANDAS. Dedee, do you go on a stronger antibiotic for symptom flare ups even if there is no strep? Like during a viral illness? If so, is it a longer run of the stronger antibiotic? And do you in fact see flare ups as a result of viral illnesses? Are there any PANDAS parents or suspected PANDAS parents who do not give antibiotics long term? Thanks Lisa

I would definitely bring him for a culture. As you said, It can't hurt and with new symptoms you really should be sure. Lisa

This site may help with some information explaining the titer numbers http://www.healthatoz.com/healthatoz/Atoz/...ibody_tests.jsp Is your child experiencing symptoms? Throat culture? Did your doc suggest antibiotics? If no, you may want to consider a second opinion soon - to perhaps try antibiotics to see if they help??? Is this the first time the titers were high? Lisa

Our doctor friend orders them for his family and he ordered one for us. He said though that anyone can order them online. I think I searched once and there were many choices.

Hi Dedee, It was very interesting about the titers that they rise 4 to 6 weeks after the symptoms present. Not what you would think about missing a strep in the past necessarily. Dedee, I would definitely take your son in for a strep test and culture it. Believe it or not I have actually purchased at home rapid strep tests for just such instances. I would never trust it over a culture but it can at least be a preliminary to help me decide when to go in to doc. I also used it to test myself and my husband to make sure we are not carriers. But I would take him in to be sure. My daughter merely told me she had a tickle in her throat and I took her in and she was positive! Before all this I never would have taken her in! Lisa

The first strep we caught after the onset of tics was about 3 weeks later and was treated with anantibiotic and we did see an improvement in the movements. Then the next month she got it again and took zithro and there was even more improvement after that. Then we started with the Bontech vitamin and the movements were completely gone. How much of it was the vitamins I'm not sure, but we feel the antibiotics definitely helped. For a while I was attributing the improvement to the vitamins having put the PANDAS idea out of my head, but in thinking more about the chronological order of events, I realized things got better after the two rounds of antibiotics as well. I think the vitamins may have helped calm her and hopefully have helped with her immune system (although I'm not sure about the grapeseed extract with all that Cheri has posted about immune boosters and immune modulators) I do give extra of Bonnie's magnesium taurate.

Thanks Dedee, That is very interesting - especially about the titers... here's the link http://www.ucdmc.ucdavis.edu/mindinstitute...ded_events.html Lisa

I will! Thanks Amy. We have the Sheila Rodgers book. We are seriously considering going to Florida! I do wonder about trying antibiotics for flare ups. I worry about progressive damage.

Hello everyone, A few of you may remember me from early summer. My then 4 year old started with eye blinking and shoulder shrugging. Her brother had strep at the time but we did not test her because she did not have "classic" symptoms but did have a very bad upper respiratory virus. About 10 days after onset of tics an ASO titer was run which came back normal so from what I read here and other places we put PANDAS out of our minds. Then she got a very minor sore throat and we brought her in right away and she was positive for strep. It happened again the following month with just a long lasting cough. I gained so much information from this site and began the Bontech vitamins for my daughter. As far as we know, she has been strep free since with numerous swabs throughout the months. Her tics went away when we started Bontech (which was slso the same time she had ended zithromax) and things have been ok. I come back to this group to learn more and perhaps contribute... With her having had those two bouts of strep without any classic symptoms I cannot get out of my mind that I am sure we missed strep in the past. In fact, she had some really bad nights of screaming, for which I am painfully, painfully sorry I didn't take her to a doctor - and following that time she is a different child - oppositional behavior, anger, major sibling jealousy, sleeping issues, all of which seemed to wax and wane - but some of the very difficult periods were long. Recently she has had some extreme separation anxiety and I feel like I keep trying to put the pieces of the puzzle together. We tested her for strep at the time of the separation anxiety and was negative. I really feel now that this could be more of a PANDAS type situation even though she tested negative recently with the separation anxiety. Perhaps the onset of tics in the spring was due to the viral infection she had which I have heard can be a trigger. Untreated Strep may very well have triggered this whole thing from the beginning. Recently we think her possible lip puckering has come back, although she has developed this chronic nose congestion that really bugs her. But her behavior is a bit angry again, and she has dark circles under her eyes. She has had some candy since Halloween, which we never eat... I have since learned that it is much more accurate to run both the ASO titer and the anti-DNAse titer at the same time. We have never done that and I think we should. I know that if her titers are normal our current peds would probalby not give antibiotics. if we are ever in the situation where the tics/behavior more strongly return could I find a doctor who would be willing to try.... Would a DAN! doctor?? Aren't there any other tests that can rule PANDAS either out or in? I've read about certain markers and interferon gamma things??? I know several of you have seen Dr. Murphy. What tests does she run exactly? Has anyone seen Dr. Swedo? My concerns are that of all you parents, is this progressive? Do the people with extreme tics/behaviors in young adulthood have it that bad because it was not known how to treat it as a young child? Or the root cause was never found? If the root cause is strep, should antibiotics always be tried at least during an exacerbation or flare up? Can anyone help with separation anxiety? Thanks so much Lisa

Thank you all for your very detailed and thoughtful responses. Ronna, you are concerned that my son is not being treated... he did test negative for the rapid and I called this morning and the reading of the culture still looked negative and they are keeping the culture until tomorrow morning when the doc on call will stop by the office to read the cultures. Are you saying he could still be positive for strep with a negative throat culture? Is it only the aso titer that can tell for sure? Having other family members tested is a good idea. My husband brought up the idea that maybe someone else has it or is a carrier. I most emphatically don't want to miss one in him as well. Our doc told us that a person who is a carrier will always test positive for strep. Lisa

Hi there, I haven't posted in a while. Have been busy researching and going to different docs etc. Brief sum - my 4 year old daughter had onset of tics a couple of months ago and tested fine for ASO titer but her brother did have strep at time of onset. She has since had strep and now has strep again. Both of these latest times she was virtually strep symptom free. Right now she has a virus and brought her and her bro in because her brother has a rash. The doc tested both of them for strep and she was positive and he was negative for rapid. They will culture it overnight but read it in the morning which will only be 17 hours. I will call in morn and request that they leave them longer per an earlier post saying they should be cultured 72 hours. I am sure they won't do it that long. Moving on, my daughter doesn't have typical or classic signs of OCD that we can tell yet, but she does have many of the behavioral things as described in Dr. Swedo's info and they have been worse I think this week. She seemed pretty hyperactive this evening as well. I got a doc today who had at least heard of PANDAS although I'm not sure he knows about it. But he was willing to put her on zithromax as I told him I had read it was helpful with tics. He only put her on it for 5 days. What do you all think about that? Should it be longer? I wasn't thinking PANDAS there for a while because of the low ASO titer, but now with this round and her behavior - very irritable, demanding, easily frustrated, a slight increasing in ticking, I'm not sure. Can't this all also be symptoms of Tourette's? These kinds of things have been going on for us for a while now leading me to think that strep has been missed in the past because we now know she doesn't show obvious signs. Feeling sick about all of it, Lisa

Hey C.P. Thanks for being so patient with me. I am sorry to be so thick about this but when you say Integrative doc, I mean, do I do a search under Integrative docs? My chiro gave me a name of an MD who is also holistic- is that what you mean? I guess I just need to know how to find a doc who will run tests. I've learned of an environmental doc and a naturopath....... Lisa

Hi again C.P Thanks for all that detailed info! Could you tell me where to start with all that? Where/who do I go to for all that testing? Lisa

Nadine, I don't know what to say about the talking with her about the tics. We have not really but she obviously hears what we say at the doc although we spell alot. We never say tic, we just spell. When she brings it up, especially at night when lying together in bed, she will ask about blinking etc. I just tell her it's ok that lots of kids do it, and if she feels like she has to make a movement it is fine. I recently have mentioned that we are all going to eat less treats. We have a very healthy diet to begin with but my kids do love their after dinner treats. We just have to change what they are. I'm not sure what the right thing to do is. Our daughter is very smart and aware and a little anxious to begin with. We are actually looking into a therapist for her to talk to etc. Lisa

Hello Nadine, I too have a 4 year old who recently started with tics. You may find my original post and read more. Our son happened to have strep at the time so our doc ran an ASO titer (blood test) which can show the history of the strep antibodies to see if there was a strep infection in case I missed strep in her. You may want to have that done soon if you are concerned about PANDAS. There is another strep titer - Google PANDAS and Dr.Susan Swedo as she seems to be the one who actually named the condition. Find the NIMH site for good research. Read past strands here for lots of info on PANDAS, doctors etc. I am trying to figure out the magnesium/vitamin thing as well. I found here somewhere a link to order kids calm and it explained dosages. I think you can start out with as little as 1/4 teaspoon at first. I have also learned about this Bontech vitamin with magnesium and other vitamins etc. but am not sure what to start with. We too went right to a pediatric neurologist (read earlier post). Perhaps your doc can call the neuro's office to get you in earlier. Ours did that for us and got us in. She was concerned about her young age. I am with you in the fear and panic. I haven't slept in weeks. This forum is very informative but can also be overwhelming. Hang in there. You may even find help for your own tics as well. Lisa M

sorry I posted my magnesium/vitamin question on the wrong strand. Hello to tattoomom. I can't help with any of your questions as this is all very new to me but it seems that if you keep reading and asking someone here will have some input. It seems like you have a very good start to finding some answers already with all you've done so far. Lisa

I want to thank everyone for their replies and input. It is good to hear from others who are going/have gone through similar situations. Faith, and anyone else who can help... about the magnesium... would you suggest just trying that (the kids calm) or to try the Bontech pills that have more in them. I don't know where to start with vitamins etc. Just a reminder, my daughter is 4 with eye blinking, shoulder shrugging and lip puckering. I think a vocal now too - is at end of cold with a cough but the cough is staying. I don't think the kids calm has calcium but she does drink milk. The Bontech stuff sounds interesting but the site is a bit dated it seems. where should I start with vitamins etc.? thanks Lisa

C.P. What shot exactly are you talking about? How old was he when he got it? Or are you talking about all of his vaccines? Lisa

C.P. what lab work do you get done that tells you what vitamins he needs? Lisa

This is all becoming very overwhelming to me. My daughter is due for her 5 year old pre kindergarten check up and shots soon. We have always had faith in the "regular" medical system. That was all we knew really. As I said in my very first post, my daughter may have had the puckering tic for a while now. I could never place it with a vaccine or flu shot necessarily. I took my daughter to an allergist today. She had scratch tests for many out door and indoor allergies as well as the top 5 food allergies and all came back negative. I still don't know what the Alcat test is. C.P what did you mean by regular boy things? My son screams alot too. Caryn, is your naturopath in chicago?

Chemar, What exactly is comprehensive PANDAS blood testing (another ASO titer and the second type of titer?) and how often do I have it done and who does it? Can someone other than a pediatrician do it like a Naturopath? What is a DAN doctor? Lisa

Caryn, I do have a name of an allergist that my friend has taken her children to for food allergies - not knowing what the Alcat is exactly - is it a blood test? - couldn't this doc do it for us? I will have to look into the Pfieffer center. Did you happen to order the book that is listed on this site? the Tic and Tourette's book? Where did you hear of your vitamins and where do you get them? Do you use a fish oil? Lisa

Hi Caryn, I thought about seeing an allergist and I read some of your earlier entries and will definitely do it now. I will have to read up on the Alcat test and the others as I have never heard of them before. Did you bring your son to an allergist? You also mentioned vitamins. What do you give him and what doses and where did you learn about them? Lisa